=================================================================== == -- ALS INTEREST GROUP -- == == ALS DIGEST (#21, 10 FEB 1993) == == To subscribe, unsubscribe, or to contribute notes, please == == send e-mail to bro@huey.met.fsu.edu (Bob Broedel). == =================================================================== (1) ===== OUTREACH HELP FROM APPLE COMPUTER ========== > >Date : 10 Feb 93 17:09 GMT >From : GREEN@AppleLink.Apple.COM (Green, Pete,OSC) >Subject: Posting your info. >To : BROEDEL@GEOMAG.GLY.FSU.EDU > >Hi Bob, >I work in Apple Computer's Worldwide Disability Solutions Group and >we received your note about setting up an internet compatible >discussion of ALS. With your permission, I'd like to publicly post >the following message on our Disability Solutions bulletin boards >on AppleLink and America Online. I think many people will be >interested in your plans... >Please let me know if it's okay to post the following message: > >Regards, Peter Green, Apple Computer >- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - >RE: Amyotrophic Lateral Sclerosis (ALS), "Lou Gehrig's Disease" > >Are you interested in communicating via e-mail with people who >have an interest in ALS? This includes ALS patients, patient >supporters, physicians, support groups, research centers, etc. > >Bob Broedel would like to start such a e-mail discussion that >will be freely available to all interested people. If you are >set up for e-mail, and you have an interested in exchanging >information about ALS, please send a message to: > Bob Broedel, Engineer > Meteorology Department > Love Bldg, Room 404, B-161 > Florida State University > Tallahassee, FL 32306-3034 > USA > Telephone: 904-576-4906 (home) > 904-644-6840 (work) >Internet :BROEDEL@GEOMAG.GLY.FSU.EDU >Compuserve:71107,1710 >AppleLink :BROEDEL@GEOMAG.GLY.FSU.EDU@INTERNET# > Peter ... Please *do* post that message. Thank you very much (in advance) for doing that. rgds,bro (2) ===== LORENZO'S OIL ============================= Date : 10 Feb 1993 15:05:55 -0500 (EST) From : "Malcolm (Tom) Sanford, Florida Extension Apiculturist" : Subject: ALS To : bro@huey.met.fsu.edu I have just seen the film Lorenzo's Oil. It concerns the trials of a family that has a son diagnosed with ALD, one of a family of leucodystrophies (not sure of the spelling). ALD, we are told in the movie, attacks only young boys and is inherited through the mother. It is caused by an overproduction of long-chain fatty acids which, over time, attack the nerve cells stripping them of their mylein sheath. This causes the nervous system to deteriorate. The parents are told this is a "terminal" illness and there is no cure. This is a heart wrenching story with an inspiring ending that contains lots of thought-provoking material. The movie is well done and is worth every dime to go see. It brings to mind many of the conundrums that must be faced when modern medicine and science confront real life situations and suffering, such as: (1) using patients in clinical trials and as teaching props in training physicians; (2) developing funding rationales (more kids die of choking on french fries each year than ALD); (3) determining when/if patients/families/doctors should resign themselves to what appears inevitable or struggle heroically in the face of all odds. The film presents a classic case of problem solving. It also deals with: (1) cooperation or non cooperation/communication among scientists/physicians/patients/families; (2) whether or not lay persons are qualified to debate issues for which they have no formal training; (3) whether it is ethical/reasonable to release "anecdotal" information in certain situations; (4) the value of worldwide communications. The last brings me to this forum and the reason for its existance. With this message, I add my cry to that of the others howling in the electronic wilderness, hoping someone will answer. I am purposefully not telling the rest of the plot to ensure people go see this film. At the end, however, a phone number is given: 1-800-8MYELIN. I called. A recording told me about a project which is trying to come to grips with the leucodystrophies and MS (which I presume is Multiple Sclerosis). It mentions clinical trials on MS patients with Lorenzo's Oil to begin this summer. The question I have is what about ALS? Do any of the specifics [mechanisms;treatment] regarding ALD and Lorenzo's Oil pertain to Lou Gehrig's Disease? The end result seems to be the same. ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Tom Sanford Extension Apiculturist University of Florida Mailing Address: Bldg 970, Hull Rd., Gainesville, FL 32611-0620 Voice phone 904/392-1801, Ext. 143 FAX 904/392-0190 INTERNET: MTS@GNV.IFAS.UFL.EDU BITNET: MTS@IFASGNV +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ == end of als 21 ==